I have a few minutes to break and do an update on things for Josh. This week has been a pretty hectic week for the whole house, honestly I dont know whether I am coming or going, but none the less we are blessed and it could be so much worse off. Monday as you all know Josh was running a small fever, anything over 100 we have to make a call.He had an unmanageable headache up until this morning that really wouldnt give him a break. So we ended up having to go in, his temp went down, they gave a bag of antibiotics, and because his counts looked decent they let us go home and didnt feel the need to have him admitted to the hospital side. His hemoglobin were low, which also triggered a migraine along with the headache caused by hemoglobin being low. Monday it was more of a movement headache, anytime he moved his head, or eyes he was in allot of pain. He was also very nausea which he still is and we take Zofran which keeps him from vomiting but the feeling doesnt subside to where he spends allot of time in front of the toilet. Tuesday came and it was unbearable for him, it was a migraine totally present, he couldnt get out of bed, and it wasnt just a movement headache. They cut him off of Excedrin migraine because it was messing with his platelett count too much, but because the Norco was not doing a thing for him they made an exception--and thats where his relief came in for a couple hours Tuesday evening....one dose is all they would let us do. So Wed, we went in for his count check, checkup, and blood transfusion. We were hoping that this would help with his headache, but it didnt...it was still pretty harsh last night, but this morning he was relieved from it ;-). I also had an in-depth conversation with his Oncologist because he started the Nupegon shots on Tuesday evening. I was alerted by someone that these have been discontinued for kids with Leukemia because they are known to cause more Leukemia cells--Thank you Michelle-- AND YES they are it is true. What these shots do is they are a synthetic substance that gets the body to create more bone marrow cells. They are given to every other cancer but those with Leukemia, because Leukemia is a blood cancer...and that is where Josh relapsed. The thing is, they do not give these shots to kids that have Leukemia because of this reasoning, with the excpetion of two things...kids that have relapsed, and kids that have the Philadelphia Chromosone. I gave Joshs residents a teaching lesson because they couldnt answer my question and had to consult with the actual Dr. Even though Josh is considered high risk, and is taking just about the same chemos as high risk diagnosed Leukemia kids, he is getting a much much stronger higher toxicity dosage because he relapsed. And because he relapsed and the dosage is so much higher and Toxic, it is necessary for him to get these shots in order to not only prevent infection, but also to get him to the point for the next dosage of chemo, which will knock him down again. They cant give him his next dosage with out his body building back up something to knock down. The possible side affects of Spleen Rupture, Lung problems, and heart problems are scary, but....his body cant handle the chemo if he didnt get these shots because of the toxicity and higher dosage amounts than those that are high risk and havent relapsed. I was thanked for the teaching opportunity by the Dr to his residents, and it seems to be what my agenda is every time I go in with Josh to see the oncologist because I want to know--EVERYTHING--the good, the bad, the ugly, and the neutral. I feel as though if I dont research and study and get informed--Reading case studies, and all the scary stuff thats out there(and I read and get my information from firm sources not blogs) that I wouldnt be a very good mother because I need to know everything that may be a possability in order to take care of my son to the best of my ability--I want to know. Like I said, although we have been through this before, its all new to us. This road is nothing even remotely like the road that we went down before. Its almost like we have been newly diagnosed and are facing this for the first time. So many new side affects, medicines, rules that we are facing this go round, so many unexpectencies and unknowns. Its all new. The only thing that isnt new is the point that we have to stay away from sick people, the port and no rivers or hot tubs, and fever reporting. Everything else....is a new road for us to wander down. I would like to say thank you to EVERYONE for all the continued support. I want to share something that is a huge compliment and I hope Bruno that you dont get upset with me sharing this, but we are so honored that you thought about Josh, and just the fact that you are going to do this is so inspiring and heart warming. Bruno who has been following Josh will be running in a Marathon in Chicago on Sunday for Childhood Leukemia, and he has asked to wear Joshs name on his Jersey. We are absolutely thrilled about this, and think it is AWESOME! Cant wait to see pics! So with ending this I will say that Josh is doing pretty good today, his spirit has been in fighting mode for the last month, which is amazing to see him turn around, he is joking and happy even when he is having horrible headaches-he always finds the time to smile and even joke around with me! His headache is gone as of this morning, which is a blessing in itself, and although he is still nauseous, his strength, spirit to live life, and determination and fight is at its ultimate high and I have to thank all of you for helping because I truly believe that the support, prayers, encouragement, cards, gifts have truly let him see that people do care, and that he can and will do this! Cancer get bent cause we are stubborn people in this family and we dont give up!
Posted on: Fri, 10 Oct 2014 17:11:28 +0000
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